Catfreak's CCSVI journey

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby prof8 » Tue Aug 04, 2009 7:17 pm

I must be one of the new ones too. He called me today (I started a post as he called me less than 2-3 hours after he got my file). I was told mid Sept. Although he could maybe squeeze it in in Aug. because of my job. I guess I am waiting for Alex to call. I'm not super bad off either BUT I am interested in doing everything I can to slow down this disease!
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Postby cheerleader » Tue Aug 04, 2009 7:40 pm

I am so glad to know that Dr. Dake wants to continue to treat MS patients after the symposium and into the fall. This is amazing news, since when we first spoke, he was only going to see a few patients and write up a paper. Looks like he really believes this is going to help patients. His dedication and work ethic astound me.

As far as the symposium goes...he will be the one teaching :) We can only hope he'll inspire more doctors to not only diagnose, but to treat CCSVI.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Tue Aug 04, 2009 8:25 pm

cheerleader wrote:As far as the symposium goes...he will be the one teaching :) We can only hope he'll inspire more doctors to not only diagnose, but to treat CCSVI.


No doubt, but I think on something this new there is a lot of room for the synergy of a lot of great minds at a symposium to take this thing even further. Of course who knows, Dr D may have to spend all his time answering questions about stents.

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Postby Rokkit » Tue Aug 04, 2009 8:36 pm

catfreak wrote:Question? Do we want to be one of the ones that he presents at the symposium as a case study or do we want to, like you said, get him fresh from all that learning at the symposium?


My personal opinion is that the symposium is as much for the "inner circle" to compare notes and brainstorm as it is to disseminate information. At first I was afraid like Cheer said that the window of opportunity with Dr D was going to close, at least for a while. But now that it appears that may not be the case, it is a good question. Dr D has already modified his approach in using smaller stents. And he has wondered if he should have been more aggressive with Holly. Lew may be getting the other side done. Obviously the longer you can wait the more he will know.

The other side of it is I don't think there's anything he's going to do now that's going to be wrong, but you might have to go back and get other things done. So from that standpoint maybe the strategy is get all you can while the gettin's good and be willing to go back for more if necessary.

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Postby catfreak » Tue Aug 04, 2009 8:49 pm

Joan,

I got the impression that he is going to keep doing this as he feels it is really helping MS patients. Since most of my worst symptoms are brain fog, various cognitive problems, headache, ear issues and fatigue, he said he thinks I could really benefit from the procedure. I am very blessed to still have good mobility aside from cramps, spasms, pins and needles ect..... He reiterated - no guarantees at this point since it is so new and they are still learning.

I think he is fascinated by all of us MS'ers and our determination!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby catfreak » Sun Aug 09, 2009 8:29 am

Just to update, I am still waiting on the call for an appointment. It sounds like Dr D is just getting busier and busier from all the posts.

I am just patiently waiting my turn.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Sharon » Sun Aug 09, 2009 9:48 am

Rokkit wrote:
My personal opinion is that the symposium is as much for the "inner circle" to compare notes and brainstorm as it is to disseminate information

When I asked Dake about the symposium in September, he said he planned on going --thought there might be new things to learn. But, he also mentioned that he thinks he is getting better data and results than Zamboni.
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Postby Rokkit » Sun Aug 09, 2009 12:58 pm

Sharon wrote:When I asked Dake about the symposium in September, he said he planned on going --thought there might be new things to learn. But, he also mentioned that he thinks he is getting better data and results than Zamboni.


That's very interesting. I am confused about why Zamboni saw azygous problems in 86% and Dake has seen hardly any.

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